Disability Studies: Or How to Not Repeat the Past

When I think about the core of disability studies, I think about the proper approach to studying history. We are meant to learn from the past and present in order to move forward, gaining a better understanding of the beauty of people’s lives and the mistakes we have made as a society. As such, I have decided to define disability studies thusly. Disability studies is an examination of the past and the present ways of understanding disability in order to create a more equitable and empathetic future. It is also a way of recording the history of the lived experiences of people with disabilities as a means of catharsis and visibility. Despite this definition, it is important for me to understand that disability studies are in flux and unlike concrete studies of other academic kinds. As a fairly recent topic of academic focus, there is much that we can learn from the world around us and the past we have experienced. However, what remains one of the most important pieces of disability studies to me is that we center the voices of people with disabilities. Both disabled academics and people who share their everyday experience outside of academia. We have to develop a compendium of knowledge around disability and the disabled experience before we can truly pinpoint a stable definition of disability studies.

Our understanding of disability as a society is still pretty primitive, given that as a whole society has chosen to oppress and suppress the stories of people with disabilities for centuries. Until we can see people with disabilities, and really see them, we will never have an equitable society. Similarly, Alice Wong says in the Intro of Disability Visibility, “Collectively, through our stories, our connections, and our actions, disabled people will continue to confront and transform the status quo” (“Disability Visibility”, Wong, xxii). Wong says that through our collective communities with people with disabilities, we can confront the norm that society has created as a means of pushing past it and developing something new. 

 Despite Nothing: Visibility, Community, and Redefinition

When considering the topics of community and redefining language, we first have to see and understand the core of the topics by recognizing what we know and what we understand. This is the core concept of visibility: being seen, understood, and listened to. Growing up, I could probably count on one hand the portrayals of disability that I saw or read in media. To this day, answering the question of how much disabled media I consume remains a small number. Between the lack of representation in publishing and on-screen, to the lack of conversations that we have in the everyday about disability, it remains a bit of a touchy subject with a lot of people. Some people avoid discussing disability because they fear offending someone, or they don’t know enough about it to want to talk about it, or they avoid it because they dislike the concept entirely. But the fact remains that as a society, “if I don’t see it, it doesn’t exist”, and so people with disabilities get swept under the rug or placed on pedestal to be admired, but never understood. Society doesn’t have an understanding of the lineage of disability or the breadth of experience that disability provides across the world. But still, we move forward toward a change and an attempt to see how to better move forward. When discussing ancestry, Stacey Milburn says, “…the ancestors would be the first to say that a lot of our contemporary politics are practical ones in nature- wanting loved ones to live life well, to have needs met, to experience joy, to love, to do what needs to be done, to feel freedom” (“Disability Visibility”, Milbern, 270). Milburn has an understanding that our ancestors and our pasts work together in tangent with the present to make a better future, but we have to look at them and recognize them first. I will continue to center the experiences of people with disabilities in my studies as a means of recognizing their lives and learning from them that I might share the experiences that they have to give with others, to increase the visibility of the disabled community.

Once we have seen the past and the present, we can get a better sense of community and redefinition. Community has been at the center of so much of what I have already studied. It is a deep longing for connection with others, to find a common thread and find joy in the relationship with people who are similar. I think that the studies of community in general are fascinating, but it goes beyond my understanding in the disability context. People with disabilities have been systemically denied community in the past, only given it in early learning or medical contexts. This leads to an increased sense of loneliness and hopelessness that could be easily avoided if society acknowledged the disabled community. This creates a sort of tension because if we focus on the academic community of disability, we are losing out on the experience of so many people who are not in academia. Similarly, if we stick to the common medical community, we are continuing to limit people to their diagnoses instead of acknowledging their scope of identities. This tension is addressed in stories like that of s.e. smith, who talks about the beauty of disabled spaces. They say, “It is very rare, as a disabled person, that I have an intense sense of belonging, of being not just tolerated or included in a space but actively owning it” (“Disability Visibility”, smith, 272). It is this sort of narrative that needs better understanding. Why has society kept community away from people with disabilities and how can we go beyond that?

Finally, understanding disability studies means understanding the need for redefinition. “The elements of interest here are the linguistic conventions that structure the meanings assigned to disability and the patterns of response to disability that emanate from, or are attendant upon, those meanings” says Simi Linton in her book “Reassigning Meaning” (Linton, 8). This concept is central to disability studies because our current definitions of words that are integral to the study are closed off and dated. Keeping disabled terminology centered in its medical origins is a limitation on the socio-political understanding of disability as we know it today. Once we redefine and reclaim terminology for the benefit of those with disabilities, instead of the limitations, it will be difficult to grasp at the core of disability studies.

Moving On: Coping With the Unknown

Thinking about the future of my personal disability studies journey, I think I have a good understanding of the theory and language surrounding the studies. However, I think that I am missing a practical element. While it is useful to be able to identify tropes and dated patterns of thought, I want to know how to apply and share my understandings outside of the academic context. How can I serve the disabled community, as both an ally and a member? Where do my privileges and limitations of experience fit in with disability studies? And broader questions like how do we help society to move beyond the inspiration porn concept of disability? 

Similarly, I would like to dig deeper into the study of mental illness as disability. We have many definitions of disability at this point, some broad and some narrow, but where does mental illness fit in? For specificity, does the mental health reclamation movement going on right now help the disability movement? Or is it a completely different conversation entirely? 

And as the broadest question of all, what is the end goal of disability studies? Is it to understand and learn from the past, like my definition of the study? Or is it simply to create an environment where people can be seen? 

Works Cited:

“Disability Visibility: First-Person Stories From the Twenty-First Century” (2020). Ed. Wong, Alice. Chapters by: smith, s.e.., Wong, Alice., Milbern, Stacey. “The Beauty of Spaces Created for and by Disabled People”. “Introduction”. “On the Ancestral Plane”. Vintage Books.

Linton, Simi. (1998). Claiming Disability: Knowledge and Identity. “Reassigning Meaning” pp. 8-17. New York University Press.